Autism in everyday life

I’m scared.

Anytime I see “autism” attached to something, I automatically assume I’m going to feel insulted, because 99 percent of the time, I am. Most of the resources/articles/blog posts are written by allistic people.

I fear the language “person with autism”, because it’s demeaning and hurtful and feels so burdening…because I sometimes feel like a burden, too, and the part of me that feels like such a burden? It terrifies me. It terrifies me, because I know there are some things I simply cannot do, no matter how hard I try. Sometimes I take a little longer to respond to a question, because not only must I process the question into my head, but I must also figure out how to get my response out. Sometimes, I understand a question internally, but I cannot figure out how to outwardly respond.

I fear the language “person with autism”, because it infers my autism and I are two separate entities, but…they’re not. I am my autism, and my autism is what makes up me—much like the annoying hair that grows on my legs and arms, much like the brown coloring in my irises, much like the melanin that determines the color of my skin. My autism is me, and I am my autism, and when someone tells me I am not autistic, but a “personal with autism”, or calls another autistic person such, I grow shaky and anxious. It’s a triggering phrase to me, because I know what it’s like to have people try to remove the autism from an autistic person—to force autistics into uncomfortable situations and try certain technologies/practices to get the stimming to stop.

I fear the language “person with autism”, because the phrase reminds me of my own version of hell: a place in which autistic people truly are the devil’s spawn and must be stripped of their autistic tendencies.

And then I’m expected to be fine with the language, because allistic people tell me how they’re not talking about me and they didn’t mean it like that and I’m not like their child, because I can do this or that, or maybe I’d never do ___, because their child wouldn’t disrespect them in that way.

And I’m supposed to be okay with it, because I don’t understand their situation and have never experienced similar pain, but…haven’t I experienced slightly worse? I don’t like going into the game of “Whose pain is worse?”, but if you want to go there, I can go there. I don’t speak out against certain anti-autism tactics more because I feel like it. I’m not against strapping autistic kids down because I have no clue what it feels like. If you’ve done any of that to your autistic child, I am like your child whether you like it or not.

And I’m not against your child—I’m trying my best to advocate for children like yours, because it sucks to be in a situation where you feel like no one understands you, or you cannot communicate with people in your own language.

I’m going into triggering situations sometimes in hopes that maybe, just maybe, I may be able to help make something a little better.

And that’s what a lot of other autistics are also trying to do.

But then we’re faced with harmful language, and it makes it hard. We’re knocked down by allistic people, because what right do we have, as autistic people, to advocate for our own kind? We’re knocked down by allistic people, because what do we know about autism?

There’s a communication barrier, and there is a lack-of-respect-for-the-autistic-community barrier. And what I have personally noticed, both through my own life and through autistic community-based forums, is that—contrary to popular belief—autistic people are doing a lot more in terms of meeting halfway, whereas allistic people are still in their closed-minded little bubbles. And until allistic people are willing to do a little more in terms of meeting halfway—because autistic brains can only do so much—there is always going to be a divide.

Perhaps, instead of using your allistic perspective of autism, you could consult actually autistic people who have lived all their years in a world created for neurotypical people.

/endrant written for no one in particular

I’m back on talking about my autism, with a whole new bout of determination and motivation. Skip the platitudes, thanks.

Sorry, but comments are closed on this post.

Comments on this post

Louise’s gravatar

We need more autistic adult authors. I’m sick at the moment, but I want to get on to starting that vlog (I did say podcast, but I might do a vlog… arg! Not sure!)

Liz’s gravatar

Aw, I think I’m getting sick! 🙁 But yes, there aren’t a lot of autistic adult authors…and there are rarely autistic people in fiction books. I’m finding the major characters I’ve created are autistic people, which is kind of cool. There’s a list of autistic authors of nonfiction novels, but I can’t seem to find it. ?

Louise’s gravatar

Eeep. 😛 I didn’t mean just books. I probably said it to you already, but I wanted it said in a public comment: More autistic content authors, in any and all mediums possible, would be fantastic.

The more we can be seen in, and talk about, everyday life, the more we can drop stereotypes and stigmas. (At least that is my goal. Not sure if it will work, but I’d like to find out.)

Liz’s gravatar

Oh, ha. My bad. ? But I agree with you there, too. I’d love to see more autistic content authors, and I’d also love to see some autistic creators in film, because I love film myself, and…well, it could be really game-changing and help with bringing more acceptance, methinks.

That’s also one of my goals…maybe if the stereotypes and stigmas are dropped, some of the hate will cease to exist as well? But it is hard to be “out”, as an actually autistic person, because there is a lot of ridicule that comes with it. But…ugh. It’s a constant war I have with myself, but the part of me that wants to be another voice and help change the conversation and create more autism acceptance tends to win over—and that is how this post happened.

Jenn’s gravatar

I believe I’ve said (written) it before, but I just want to say (possibly again): thank you for sharing your thoughts on autism. My 10 year old son is autistic / a person with autism / special-needs / whatever-the-language-is-these-days-to-dance-around-the-subject, and I really enjoy reading your posts about autism and what it is like to live as an autistic person in our current society.

I’m trying to learn all I can while treading carefully, if that makes sense. And with my son, more than anything I try to instill in him the belief (because it IS true) that he is not his disability, though obviously his autism is a part of him – he’s just wired a bit differently, and views/interacts with the world a bit differently.

Liz’s gravatar

Ah, yeah, I remember. ❤ It’s hard sometimes, though, to be so open. It’s a vulnerable topic for me, and when I share various stories (e.g. when people become special interests) offline related to my autism in particular, it’s met with platitudes. “Yeah, that’s a crush” just makes me cringe, for example, because it’s gotta be the most harmful special interests, and the last thing I need is allistic people egging it on or the allistic person who’s become (or becoming) a special interest to feel flattered.

A tip I have (if you want) is to find autistic people in your community (or in popular culture) who have similar limitations for him to look up to. I’m actually working on a post about role models, but I can’t articulate it how I want. ? The lack of autistic people available to me for role models when I was growing up (and even today, as an adult) resulted/results in me just giving up [at times] altogether and led to more frustration. I looked up to allistic people who could so easily do all the things I wanted to be able to do, because I wanted to be “normal”, but I knew it was impossible because I knew I was different. It’s pretty morbid, but the utmost thing I wish I could change about my childhood is having had an autistic role model, or at least someone similar to me. The autistic adults who have paired up with parents of autistic kids say the relationship is win-win: allistic parents help the autistic adults make sense of why allistics are a certain way, and the autistic adults help the allistic parents make sense of why their child may be doing ____. Because an autistic child is automatically part of the autistic community, whereas the allistic parent of an autistic child essentially has a backstage pass…and also because it can apparently help the autistic child to transition into the community more easily.

It might help to instill in him a bit of the autistic pride, especially since the world, by default, is rather neurotypical-based, and doesn’t consist mostly of people who rock or sway or flap their hands.

(But then again, you also have cats, and cats are autistic, so.) ???

I also want to mention how I do like how you seem/tend to be respectful. It gives me hope that not every parent is insistent on ABA therapy and converting their autistic child into a neurotypical robot. (Hence the above hug emoji, because I don’t give hugs to everyone.)

I’m also greatly considering a biweekly/triweekly “Autism Tuesday” thing, just because Tuesday is fun to say (and therefore my fave day) and I DO want to share more posts on my experience an an autistic/thoughts on autism/etc. It’s just hard sometimes, because there’s also all the stigma. ?